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Cohort of Children with Alpha 1 Antitrypsin Deficiency.

France, 2008
Reference ID
FRESH-PEF60120-en
Producer(s)
Alain;LACHAUX, Mathias;RUIZ
Metadata
DDI/XML JSON
Created on
Dec 18, 2025
Last modified
Dec 18, 2025
Page views
3
  • Identification
  • Scope
  • Coverage
  • Producers and sponsors
  • Sampling
  • Survey instrument
  • Data collection
  • Study activities
  • Data Access
  • Contacts
  • Metadata production

    • Identification

    Survey ID number

    FRESH-PEF60120-en
    Title

    Cohort of Children with Alpha 1 Antitrypsin Deficiency.
    Abbreviation or Acronym

    DEFI-ALPHA
    Country
    Name Country code
    France fr
    Kind of Data

    ['Clinical data','Biological data','Paraclinical data (non-biological) : Imaging']
    Unit of Analysis

    Individuals

    Scope

    Topics
    Topic Vocabulary
    Hepatology health theme
    Diseases of the digestive system cim-11
    Biological determinants: Genetic predisposition health determinant
    Biological determinants health determinant
    Keywords
    occurrence of complications ultrasound/Doppler ultrasound FibroScan fibrosis test endoscopy and oesophageal video capsule platelets transaminase and gamma-GT Health episodes factors liver transplantation

    Coverage

    Universe

    {
    "level_sex_clusion_I": [
    {
    "value": "Male",
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D008297"
    }
    },
    {
    "value": "Female",
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D005260"
    }
    }
    ],
    "level_age_clusion_I": [
    {
    "value": "Child, Preschool (2 to 5 years)",
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D002675"
    }
    },
    {
    "value": "Child (6 to 12 years)",
    "concept": {
    "vocab": "MeSH",
    "vocabURI": "http:\/\/id.nlm.nih.gov\/mesh\/D002648"
    }
    }
    ],
    "level_type_clusion_I": "Patients population",
    "level_type_clusion_other": "",
    "clusion_I": "",
    "clusion_E": ""
    }

    Producers and sponsors

    Primary investigators
    Name
    Alain;LACHAUX
    Mathias;RUIZ
    Producers
    Name
    HOSPICES CIVILS DE LYON
    Funding Agency/Sponsor
    Name
    LABORATOIRE FRANCAIS DU FRACTIONNEMENT ET DES BIOTECHNOLOGIES (LFB)
    MINISTERE DU TRAVAIL, DE LA SANTE, DES SOLIDARITES ET DES FAMILLES

    Sampling

    Sample frame

    Unit Type

    ['Through organizations (health services or institutions, schools, businesses, etc.)']
    Sampling Procedure

    ['{"concept":{"vocabURI":"Other","vocab":"CESSDA"},"value":"Other"}']

    Survey instrument

    Questionnaires

    Access on specific project only
    Methodology notes

    Observational Study

    Data collection

    Dates of Data Collection
    Start
    2008-01-01
    Mode of data collection
    • {"concept":{"vocabURI":"Interview","vocab":"CESSDA"},"value":"Interview with the participant (including clinical)"}

    Study activities

    Study activities
    Type
    primary evaluation
    Description
    Health event/morbidity Health event/mortality

    Data Access

    Access conditions

    To be decided if data may be used by academic teams.
    Availability Status

    {"value":"Restricted access","extLink":[{"title":"COAR","uri":"http://purl.org/coar/access_right/c_16ec"}]}
    Restrictions

    To be decided if data may be used by industrial teams Access for potentially interested LFB laboratories

    Contacts

    Contacts
    Name Email
    Lioara;MIRON-RESTIER lioara.restier@chu-lyon.fr
    Mathias;RUIZ mathias.ruiz@chu-lyon.fr

    Metadata production

    DDI Document ID

    FRESH-PEF60120-en
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